On the course in Wales, July 2023
Future Leaders course
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MUSCLE GLYCOGEN STORAGE DISEASE
NEWS NEWS NEWS NEWS
AGSD-UK GLISTEN MAGAZINE AUTUMN 2023
AGSD–UK has published its autumn edition of Glisten magazine. This has 14 pages on McArdle’s and other muscle GSDs generally, including reports and photos of the walking courses, an article about the Continuum of Care model and David Thompson's account of his preparation and training for the UK Three Peaks Challenge.
FORTHCOMING WALKING COURSES
AGSD-UK has announced dates for “The McArdle’s Experience”, 2024, Brecon Beacons National Park.
Under 21s: Monday 29 July to Monday 5 August
Adults: Monday 5 to Friday 9 August
Following the training of “Future Leaders” in Wales July 2023, IamGSD anticipates holding a course in the USA in 2025. Location yet to be decided. Details will be announced here in due course.
MCARDLE RESEARCH IN AUSTRALIA
Queensland University of Technology in Australia is conducting research into the effectiveness of current nutritional guidelines in the management of McArdle’s. They are looking for people who can exercise for 20 minutes under different nutritional states. At present, there will be two sites, one in Brisbane and one in Melbourne. Download participant information sheet, then contact principal researcher Sam Torrens:
WORLD MUSCLE SOCIETY POSTER PRESENTATIONS
At the World Muscle Society congress held in October in Charleston, USA, two poster presentations were made about McArdle disease. Prof Nicol Voermans presented on a paper about how patients learn to live with McArdle’s in daily life. Dr Salman Bhai presented the paper on the development of the continuum of care model. We have made the posters available online, as these are in plain language for patients.
CONTINUUM OF CARE PUBLISHED
A “Continuum of Care” model has been developed by a team of expert clinicians and patient advocates as a practical tool for clinicians and McArdle patients. It is published in a leading journal. It identifies areas of learning for patients to achieve an optimal state. The model outlines five pivotal steps (diagnosis; understanding; acceptance; learning and exercise) to assist clinicians to determine patient-specific learning needs and to help optimize care for these patients.
NEW RESOURCE RE URGENT CARE
We have launched a new page on this website to provide guidance through a flowchart. It helps you assess a bad episode and make your decision as to whether to attend hospital for urgent medical care. It guides you through the areas you need to think about to arrive at your decision. There is a link to download a PDF of the flowchart, which may be useful to print out, or to have on your phone for easy reference if ever required. Many thanks to all who helped, including our Scientific Advisory Board.
GLOBAL WALKING WEEK CHALLENGE
This week-long walking event was established 10 years ago to raise awareness of the importance of engaging in regular physical activity (150 minutes/week). It is not intended to be a competitive challenge against one another, but rather an opportunity and incentive to get moving in your locality – whether it be just a few steps, a few blocks, or a few miles or more each day. It starts on October 14.
GLOBAL WALKING WEEK RESCHEDULED
Our regular annual Global Walking Week has been rescheduled to autumn 2023, to give more time to promote this amongst the community, and to put in place fundraising efforts which we hope many people will support. The week is now scheduled for Saturday 14 October to Friday 20 October 2023. Please follow the link to more details and sign up to the week!
LEAFLET – AT PEACE WITH MCARDLE’S
We have published a new leaflet entitled “At peace with McArdle’s – ideas to help with mental well-being.” It is available now to browse online or to download a PDF. The leaflet draws on the experience of many McArdle people who perhaps have struggled with self-image, anxiety and/or depression, but have found their way to living positively with this disorder. When shared with family and friends, it will help them to understand the issues that we can face and guide them as to how they can help.